Informing Families

Informing Families Consultation and Research Report Amount/level of information provided In evaluating the level of information that was given to parents on the last occasion that professionals informed a family, the majority of respondents felt that the parents received enough information in contrast with 49.5% of parents who made this response. A very small proportion of professionals indicated that too little information was given, in contrast with 39.7% of parents. Over half (55%) of respondents indicated that they asked the parents if they wanted more information. Table 5.54 - Amount/level of information received Information provided n = Percentage Enough information 152 63.9% Too much information 15 6.3% Too little information 13 5.5% Missing 58 24.4% Total 238 100% Quality of information The majority of professional respondents noted that the information provided to the family was both easily understood and up to date. A smaller proportion indicated that the information provided was easy to remember. No information was received by parents in three of the cases described. As can be seen from the table below very few professionals felt that the information provided was too technical. Parents indicated less often that the information they received was up to date (45.1%) and in two fifths of cases felt that it was too technical. Table 5.55 - Quality of information received Quality of information n= Yes No Don’t No Missing Was the information provided to the family… Know Information received Easily understood? 180 61.3% 5.5% 7.6% 1.3% 58 Easy to remember? 165 43.7% 9.2% 15.1% 1.3% 73 Up to date? 164 60.1% 0.8% 6.7% 1.3% 74 Too technical? 154 6.7% 44.5% 12.2% 1.3% 84 Timing of written information Almost half the respondents indicated that no written information was provided to parents at the time of diagnosis. Responses from those who indicated that parents received information ‘at a later date’ were spread widely and ranged from 24 hours to 6 months later. Table 5.56 - Timing of written information Written information received Was written information provided… n= Yes No Don’t Know Missing At the time of diagnosis? 152 15.1% 44.5% 4.2% 86 At a later date? 153 34.5% 22.3% 7.6% 85 121 5. NATIONAL QUESTIONNAIRE SURVEY OF PARENTS AND PROFESSIONALS

Informing Families Consultation and Research Report Information about tests undertaken Following diagnosis professionals indicated that tests or investigations were carried out in over two fifths of cases, (contrasting with over three quarters of parent respondents). In both parent and professional questionnaires the vast majority of respondents indicated that any tests undertaken were explained to the family. Of the professionals who indicated that tests/investigations had been undertaken, just over half (57.5%) explained the tests to the parents themselves. Table 5.57 - Tests/investigations undertaken Test / Investigations Undertaken Was written information provided… After the news was given were any n= Yes No Don’t Know Missing tests/investigations undertaken? 174 44.5% 22.3% 6.3% 64 If yes, were they explained to the family? 104 95.3% – 2.8% 2 Follow-up Professionals indicated that in over two thirds of cases the family were provided with a contact name and were offered a followup meeting. The small number of families who did not receive a contact name or follow up meeting as indicated in Table 5.58 below, contrasts with 41.5% of respondents to the parent questionnaire who reported that they were not provided with a contact name, and 29.9% of parent respondents who did not receive a follow up appointment. Table 5.58 - Follow-up appointments and named contacts n= Yes No Don’t Know Missing Was the family provided with a contact name after the first meeting? Were the family offered a 182 65.5% 5.5% 5.5% 56 follow-up appointment? 178 64.3% 5.5% 5.0% 60 Follow-up Appointment From Figure 5.19 below it can be seen that the majority of follow-up appointments were scheduled within a month of the first meeting. Frequency 60 50 40 30 20 10 0 34 Less then one week Figure 5.19 - Length of time before follow-up appointment 53 38 8 1-2 weeks 3-4 weeks 5-6 weeks 2-3 months 6 months or longer 122 10 2 2 4 Other No follow up appointment scheduled 13 Don’t know